Sep 23

Trials and Tribulations of Traveling

Growing up with life threatening medical problems made it difficult to travel, especially once I was put on oxygen and later a ventilator at night.

Coming home on a ventilator was a huge deal in those days – I was one of the first in the country to do so! Prior to being placed on a ventilator, I was always sick and had to be hospitalized on a regular basis. So travel did not come into the equation much. Mix that in with having three other siblings – it just was not feasible. Our family trips usually consisted of going to Green Bay to see the Packers or Bay Beach Amusement park. Sometimes we would go two hours south to the Milwaukee County Zoo, and, on occasion, venture down to Rockford to visit the grandparents and extended family.

The first few years of my life consisted of my folks taking me to Madison or Chicago (sometimes weekly) for hospital visits. I remember as a child feeling very uncomfortable while a team of male doctors stood over me discussing my body as my parents looked on. Although I could not totally understand the doctor’s lingo, nor could my parents, I knew it was never good.

One of my most vivid memories, when I was in the fourth or fifth grade, is having to go to a hospital in Milwaukee. I was hospitalized twice there as they ran all kinds of tests. Coming from a small town, it was very scary for me to travel to such a big city.  I was not used to seeing people other than Caucasians, even more so, I was not used to seeing other children with conditions far worse than mine. To top it all off, Jeffery Dahmer had just been captured and his story was all over the news. I knew he was being held in the Milwaukee area and had a fear he would break out and eat my body parts. What can I say, I had an active imagination!

This Milwaukee hospital would do all these horrible tests and leave me starving and thirsty. They would not listen to my mother about how sedatives, even the mildest, would knock me out and I would stop breathing. Needless to say, I did just that. They quickly had to find a ventilator and wait until the sedative worked its way out of my system.

We would mostly see young doctors just starting out. On our second trip there, one of these doctors slipped up when my mom asked if they came up with any ideas on how to help me. His response was, “We can’t help her. We have just been studying why she is still alive.”  My mom checked us out of there so fast! She was good about advocating for me in those days and if she did not feel I was getting the best care, even from the best doctors, we left.

Most doctors did not have a clue what to do to stop the curvature of my spine and all the damage it was causing. One hospital suggested they hang me upside down for a year in hopes gravity would straighten me out. They really did not think it would work, but that’s the only idea they had. They tried a full body cast, braces and other uncomfortable things when I was a toddler, all with minimal results.

Our last big stop seeing doctors came before my freshman year of high school.  My parents and I traveled to Minnesota to go to one of the best spine clinics in the country.  An eight-hour drive with my folks was not fun. They did not even book a nice hotel.  I’m sure I was rockin’ my Dan Marino shirt as the three of us hit the Mall Of America. At this point in my life, being seen in a mall with your folks, even out of state, was not cool!! We walked around the mall, mostly just looking.

Once again, the following day, I had multiple doctors staring at me – studying my body and X-rays as my parents looked on. Very embarrassing to say the least. Those doctors estimated I would live until thirty, based on what was seen in the  X-rays.  They predicted my internal organs would get crushed and I would die of heart or lung complications. Cheery future!  If they did surgery it would probably only help me cosmetically.  At the time, I thought dying at thirty was great, it seemed so far off.  I had been told my whole life I would die in a year; this was an upgrade. I was only fifteen and did not worry or even think of the future.

The only other major trip I took during my teen years was to Six Flags of America in Illinois. We went one afternoon after bringing my grandma back to Rockford.  My dad tried to talk me out of it, trying to say it cost too much. No way!  I was going.  It was only fair, he had taken my brothers years before. So we went; Grandma, mom, dad, and me. It happened to be the first day of school for the kids down there and the hottest day of the year! I was still on oxygen, so I could not do most of the rides. We manly walked around as my dad liked to do. He was very good at telling me everything was not safe for me to ride. Bummer. I did end up winning a basketball that day in the free throw toss. Yeah, I rock!!

At least as an adult I travel as much as I can. It’s hard with the cost of travel and leaving my two dogs and cat at home, but even if it’s two hours away I try to make it fun.  Medically speaking, it has become a little easier to travel. Smaller and less equipment helps, but it’s still a lot of extra stuff that must be packed and remembered.  Not having certain tubing or medication can be disastrous. Broken or lost equipment is really hard to deal with, especially when you cannot fall asleep without a machine breathing for you. I don’t even need it on a nightly basis, but I am so used to having it that I don’t sleep well without it.  Even with the daunting task of extra planning and packing, as well as getting hassled by airport security every single time I fly, the joy I get from traveling outweighs the bad. It’s all part of the experience!

1 comment

  1. Julie Munoz

    I love your blog Tanya! Very inspiring and you are AMAZING! Do you have a video/audio of your speech? I would love to hear it.

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